Info on Seattle FFC

Discussion in 'Fibromyalgia Main Forum' started by lightnerbride, Aug 10, 2006.

  1. lightnerbride

    lightnerbride New Member

    I just read another post that mentioned a Seattle FFC. I've never heard of the clinic and would like an address, phone number or anyway to contact them. I'd love to find help, so far no luck. I have been unable to work since 5/01 but suffered from FM & CFS since 1992. I go to Harborview Medical Center's Chronic Fatigue Center every three months but they really don't do anything, not any more than my PCP but figure it looks good for SSA eventual hearing. I am suffering so severly just the thought there is a clinic I could give a try excites me. Please give any contact info and details about what the clinic is all about.
    Thanks, A
  2. lightnerbride

    lightnerbride New Member

    I've been diagnosed by several specialist, including Harborview. Dr. Shur doesn't like to do any prescriptions either. I first went when Dr. Shur was on leave and got to see Dr. Buckwald that started the clinic and she was big into filling prescriptions and keeping a heavy hand on treatments too bad she isn't there all the time. I too got diagnosed at there sleep clinic for sleep apnea. I'm interested in learning about this FFC that is mentioned in a few other posts as hope for a wider scope of treatment regimens and help.
  3. spacee

    spacee Member

    There was a doc. by that name who headed up a Twin Study at the University of Washington of CFS. She got alot of National Institute money for the study. She seemed more intent on proving that CFS was depression. It would be nice to know that she realized the "error of her ways".

  4. hopeful4

    hopeful4 New Member

    Hi Lightnerbride,
    To get more info on the FFC, go to their website at fibroandfatigue dot com.

    The toll-free number below is the corporate office. The 425 number is in Bellevue.

    Fibromyalgia & Fatigue Center of Seattle
    3006 Northup Way, Suite 102
    Bellevue, WA 98004
    Toll-free: 1-866-443-4276
    Phone: 425-889-0676
    Fax: 425-889-0679

    They have a monthly free open-house where you can go and find out more in person.

    Also, you can do a search on this message board for “FFC”, and you will find many different people’s experiences.

    They do not take insurance, but will give you a “superbill” which you can submit on your own. Payment in full is expected at time of service. They take cash, check, credit card, and also have a credit card plan they offer.

    The labs are mainly through Quest, and they will take your insurance card and bill for you.

    Lab work to start off with is very extensive and expensive. It’s also very thorough and very revealing of things you probably never knew and were never tested for.

    They use an approach which first balances your hormones and builds up your immune system and then tackles infections, and other underlying causes of your illness.

    They use a combination of bio-identical hormones, nutrition, supplements/herbs, and prescription medications, according to your needs. If at any time you don’t wish to use some of these, you can say so, or you wish to purchase them elsewhere, you can.

    Dr. Marti is wonderful. She is very down to earth, while at the same time extremely knowledgeable and savvy. She will leave no stone unturned to get to the bottom of your illness, in my experience.

    I was sick for over 5 years by the time I got to Dr. M. I had been going to a FFC out of state, and getting worse. She had me tested for lyme disease with the Igenex test (the most reliable test out there), and I was positive for chronic lyme. This was a huge "A-HA!" moment, and turning point in my diagnosis and treatment.

    The staff is very helpful. When you have problems or medication reactions or questions, you can call, and most of the time your call will be returned the same day.

    Good luck, you’re worth it!

  5. lightnerbride

    lightnerbride New Member

    When I saw Dr. Buckwald the one time at Harborview Medical Center CFS clinic she didn't get into depression and she was really great and caring. She wanted to help me reduce the amount of medications I was taking and start taking charge of my FM and CFS care and reducing how many hands were in the basket so to speak so that I wasn't just getting more and more medications added on from differnet doctors without them considering how they reacted with meds prescribed by other doctors. She really wanted me to get off the 6mg of clonazepam I had been taking for about 7yrs. I was really excited about the clinic after meeting her only to return to see Dr. Schur who didn't want to manage my care at all just give advice every 3 months and make recommendations to my PCP who is completely not interested in doing more than filling my prescriptions.
    I hope that Dr. Buckwald has changed her perspective and changed her direction on research.
    I am hoping I can get into the Harborview clinc while Dr. Shur is back on maternity leave and see Dr. Buckwald again.
    PS new insurance started this month so I get to go back to my old PCP who cares about doing more than just prescription refills!
  6. Daisys

    Daisys Member

    when Dr. Buchwald came to Seattle--around 1987-1989. I was invited to go, but I would've had to pay for all the extensive testing, insurance didn't cover her, and she said up front she didn't know much about this illness (nobody did). I decided to give her a few years to learn, and now there's such a wait I gave up trying to get in.

    A few months ago I found a doctor who is treating FM and CFIDS and works with the insurance co. so that's a great help. I have to travel to West Seattle to see him (about an hour and a half) but it's worth it. I'm getting better.
  7. spacee

    spacee Member

    because my twin and I were part of the official study. At that time she was INDEED out to make a name for herself with CFS. She was a good friend of the infamous Dr. Stephan Strauss at the NIH who officially determined that CFS was depression (in his opinion) and spread the word throughout the US to the general docs. I have been seen by him at the NIH.

    The study was incredibily terrible for us with CFS. Dr. B. would send us monthly newsletters describing in detail all the employees of the U. of Wash who worked on the study and the vigorous activities that they did in their spare time. That WAS depressing in be reminded of what you could no longer do.

    Alot of the questions had no way to answer them but to admit to some level of depression or "being afraid" of exercise.

    Having said all that. I would not be surprised if she has not changed her tune. (If it is indeed the same doc). I think that when they chose the twins they wanted to study and brought them it...there was clearly something physically wrong with the CFS one.

    My twin and I were not included in the lab part of the study because we both had CFS. We filled out pages and pages of questions on our lifestyles and got the insulting newsletters to the point that my twin withdrew from the study. I did not officially withdraw but did not continue to answer the questions.

    If you can bear the length of this post, at one point Dr. B and her staff decided that the logo for the "twin study" would be a snake. They sent us one time a t-shirt with this big snake on the front. Later they sent us a tote bag with the same logo. Plus the name of the "artist" who would be willing to sell us more of his products.

    It was just one insane thing after another. I can laugh about it now :) but not then.

  8. lightnerbride

    lightnerbride New Member

    Who is the doc you see in West Seattle? What is his specialty? Always looking for more options since I feel so limited now and feel like I'm getting worse and worse.

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